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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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  • January 16, 2020 at 7:15 pm in reply to: MDS 5Q- with mutations #49974
    Marge Begley
    Participant

    The best thing you can do for yourself is to go to a Center of Excellence – even if you have to travel. It is worth seeing a specialist because not all oncologist are up to date on current MDS treatment. Also I wonder if you ever received Procrit injections before starting on the Revlimid. It is your body and your health and you owe it to yourself to get a second opinion. Feeling poorly, weak, no energy goes with this disease but there are treatments that may help you.

    January 3, 2020 at 4:52 pm in reply to: Has anyone seen Dr Alan List @ Moffitt Cancer Center #49916
    Marge Begley
    Participant

    I have been seeing Dr. List at Moffitt for 4 1/2 years. He is an excellent physician and developed Revlimid a go to medicine if Procrit fails. Unfortunately, he has left Moffitt. I am currently searching for a new MDS specialist at Moffitt for my annual appointments.

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